This survey, similar to the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) for hospitals, “assesses the experiences of patients who died while receiving hospice care and their primary informal caregivers” (CMS, 2021b). The survey treats the patient and caregiver as a single unit of care. Its purpose is to: ● Provide a source of information on patient/caregiver experiences that can be publicly reported to beneficiaries and their family members to help them select a hospice program ● Support hospices with their internal quality improvement efforts and external benchmarking with other facilities ● Provide the Centers for Medicare & Medicaid Services (CMS) with information for monitoring the care provided by hospices (ARHQ, 2019, p. 1) Because grief can be felt intensely immediately after the death, the survey is sent out three months after the patient’s death to the primary caregiver of the decedent. The CAHPS survey can be administered via telephone, mail, or mixed mode and includes the following measures of patient experience (CMS, 2021b). ● Hospice team communication ● Getting timely care ● Treating family member with respect ● Providing emotional support ● Providing support for religious and spiritual beliefs ● Getting help for symptoms ● Ensuring information continuity ● Understanding the side effects of pain medication ● Getting hospice care training What Is Palliative Care? Palliative care is the treatment of the discomfort, symptoms, and stress associated with advanced or life-limiting illness (National Institutes of Health, National Institute of Nursing Research, 2021). The emphasis of palliative care, which occurs across the patient’s illness trajectory, is on (1) encouraging conversations about goals of care at time of patient diagnosis of a serious illness; (2) considering the benefits versus burdens of treatment options; and (3) attending to the physical, psychological, social, spiritual, and existential needs of the patient/family unit across the life span (American Association of Colleges of Nursing, 2016). Patients receiving palliative care often suffer from the symptoms and stress of serious illnesses, including cancer, dementia, heart failure, Parkinson’s disease, and chronic obstructive pulmonary disease (COPD; National Institutes of Health, National Institute on Aging, 2017). Palliative care teams offer this care to support curative or other treatment plans of care and help patients and families understand their choices for medical treatment. Palliative care is not dependent on prognosis, and patients do not need to be in hospice or at EOL; patients can receive palliative care at any age and at any Pediatric palliative care is specialized medical care for children of any age that can be provided at any stage of a serious illness, along with treatment meant to cure (Center to Advance Palliative Care [CAPC], 2021). Pediatric palliative care provides relief from distressing symptoms, manages medication and treatment side effects, assists parents with methods to talk with siblings, provides respite care, and finds community resources (CAPC, 2021). Pediatric palliative care, similar to that for the adult ● Determining overall rating of hospice care. ● Being willing to recommend the hospice Population-Specific Palliative Care Pediatric Palliative Care
Self-Assessment Question 1 1. You are talking to your clinical colleagues about end-of- life care for a patient. Someone states that hospice is the same as palliative care and that only private insurance pays for hospice care. You know this isn’t accurate and clarify to your colleagues that: a. Hospice is a subset of palliative care. b. Hospice is a subset of palliative care and can be paid for by private health insurance, veteran’s benefits, the patient’s own income or family support, charitable donations, Medicaid, or from the Medicare hospice benefit. c. Hospice can be paid for only by private health insurance. d. Palliative care is the same as hospice care but for those in a hospital setting. Self-Assessment Question 2 2. The four levels of hospice care are: a. Routine, continuous, general inpatient, and respite. b. Routine, conventional, acute, and respite. c. Home care, palliative, general inpatient, and routine. d. Crisis care, routine, and respite. Self-Assessment Question 3 Any patient can qualify for hospice care as long as they have all of the following EXCEPT: a. An advanced illness. b. Certification of terminal illness by a physician.
c. A family to care for them. d. Six months or less to live.
PALLIATIVE CARE
time during their illness (National Institutes of Health, National Institute of Nursing Research, 2021). There are eight domains of palliative care to meet the needs of the whole person: Psychological, physical, spiritual, religious, existential, cultural, structure and processes of care, financial, social, and ethical and legal services (National Quality Forum [NQF], 2017). When providing palliative care, healthcare professionals should consider the patient population of the person for whom they are caring to provide the best and most appropriate care. Different populations may include adult, pediatric, neonatal, perinatal, and geriatric patients. Besides physical needs, other issues faced by seriously ill patients may include the following (NQF, 2017). ● Losing independence ● Maintaining self-determination and a sense of control ● Making decisions about how and where to die ● Declining functions and related concerns about being a burden ● Fearing pain and other distressing symptoms population, also aims to meet the emotional, developmental, and spiritual needs of patients and their family members (CAPC, 2021). For example, psychosocial interventions can be offered to adolescents and young adults that range from weekend retreats to transition services when they go back to school, social workers who provide counseling, and expressive arts therapists who help them normalize their situation (Sison et al., 2017). A pediatric intensive care unit nurse writes of supporting a mother after the death of her baby and how it can affect a
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